ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, July 28, 2016

It's A Gene

Google may have brought you here.  You may have been reading about an exciting or promising or breakthrough new discovery that you funded with your ice bucket challenge donations.  Here are some fast facts:

It's a gene.

It's important.

It's not a treatment.

It's one small piece in a gigantic puzzle that is literally missing too many pieces.

Ice bucket money and money from many other sources helped find this NEK1 gene that affects a small percentage of people with ALS..

There are lots of other identified genes and more are discovered all the time.

New knowledge is good.

It's not a treatment for anyone's grandparent or child or niece or neighbor.  It's not even close.

It's cruel when organizations with an eye on fundraising pitch a feel-good story to major news outlets that inevitably put the magic words "breakthrough" or "exciting" or "promising" in the text. Grandchildren or parents or aunts or uncles or neighbors read those and unrealistic hope erupts.  It's cruel.











1 comment:

  1. Well said. I appreciate more attention was made for the IBC - to help bring in more research monies. I don't appreciate that they don't focus on research monies being applied to potential treatments and cures.

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